1/ Hey Tweeps: meet Mercan! 7-month baby girl or a close friend. Mercan has spinal muscular atrophy (SMA1)- a muscle wasting disease that was considered incurable— now there is a cure! A one-time gene therapy by
@Novartis
that was recently
@US_FDA
approved!
So, just received NOA on our Cancer Moonshot grant! We will be designing an interactive interface for visual exploration of patient immune monitoring datasets. Yeowzy! 🧿🔥🥳
BREAKING: I am announcing a new directive requiring NY health insurers to waive cost sharing associated with testing for
#coronavirus
, including emergency room, urgent care and office visits.
We can't let cost be a barrier to access to COVID-19 testing for any New Yorker.
7/ Is there a hospital in US or elsewhere that offers
#ZolgenSMA
@ lower cost? PLEASE TELL ME WHERE! but most importantly,
#ScienceTweeps
, please join me in demanding reduced rates from
@Novartis
on
#ZolgenSMA
for little kids without coverage, or with the wrong passport!
Ogretmenlerimiz ve ogrencilerimizin rektore itirazi hakli sebeplere dayaniyor. Bir
@unibogazici_en
mezunu olarak ogrenci ve ogretmenlerimizi destekliyorum.
5/
#ZolgenSMA
halts motor neuron and muscle degeneration by replacing the defective or missing
#SMA
-causing gene (SMN1). So, her parents are literally running against the clock to come up w/ the $! They started a
#GoFundMe
- please donate if you can:
6/ But- this does not solve the problem- the SYSTEMIC problem (see works by
@perterbachmd
). There are many other Mercans around the world. There is a cure for their disease, but the drug company,
@Novartis
, charges an outrageous sum if parents want to use it to save their child!
8/
@Novartis
also has a lottery, where kids around the world - if they win- get treated for free; so for the majority of SMA sufferers without the funds, who gets to live or die is based on this lottery! Perhaps a lottery is better than a "Sophie's Choice" approach, but still...
3/ the family has to come up with the cash asap, before Mercan reaches 24 months, because timing is critical: "Infants dosed with
#ZolgenSMA
as soon as possible after diagnosis had better results than those who waited to be treated" (from )
Wonderful lecture by the distinguished Özlem Tureci, who delivered an exciting lecture on mRNA vaccines against cancers
@SinaiImmunol
#sinaistrong
- photo also with scientist in training
@turhanberk99
🧿💉
Sosyal medya hesabından yaptığı paylaşımlarda haftalardır hastanelerde yatak bulamadığını yazan Aslı Özkısırlar hayatını kaybetti. Özkısılar'ın ölümüne tepkiler Twitter'da
#Asl
ıölmediöldürüldü etiketiyle paylaşıldı
4/ In the US, some commercial insurance and
#Medicaid
plans have
#ZolgenSMA
coverage. But... Mercan is not a US citizen!
#ZolgenSMA
is not yet approved in Mercan's native country, Turkey, but she does not have time to wait for approval. She has to come to US for treatment asap!
9/ In this summer of questioning inequalities and healthcare disparities of haves and have nots, we need to ask: why should families like Mercan’s implore strangers for money, instead of taking care of their sick baby? The drug already exists- HOW MUCH DOES IT COST TO PRODUCE IT?
17/ &
#ScienceTweeps
, are we going to be quiet, or are we going to demand lower prices from
@Novartis
to save Mercan and hundreds of other babies from developing nations who cannot pay these insane prices? Please join me & tell me how we can be their voice! Thank you! ❤️🙏 /end
15/ On
@Novartis
side, this year Q2
#ZolGenSMA
generated $205 million revenue: So,
@Novartis
, how about a discount on the world's most expensive drug?
12/ Senators
@BernieSanders
&
@ewarren
urged
@US_FDA
to hold
@AveXisInc
accountable “unconscionable that a drug company would provide manipulated data to federal regulators.. to... charge the highest amount in American history for its medication.”
13/ So, why is
#ZolGenSMA
so outrageously expensive? The answer is simply, "why not?", according to
@AveXisInc
CEO Dave Lennon, in this video. The highlight is at min 9:48, when he coyly responds to "WHAT IS YOUR COST?", with "Good try!" & everyone laughs.
10/ So I researched: "Several US charities, including
@SophiasCure
,
@CureSMA
and Miracle for Madison, raised millions of dollars to advance the research..” that led to
#ZolGenSMA
. Plus,
@NIH
awarded nearly a HALF BILLION USD in grants to SMA research!
BREAKING NEWS:
The 2020
#NobelPrize
in Chemistry has been awarded to Emmanuelle Charpentier and Jennifer A. Doudna “for the development of a method for genome editing.”
Trump announces he's invoking the Defense Production Act, a 1950 wartime law, to expand the production of masks and protective gear to prevent the spread of coronavirus
5 years today since I lost my dad to a yet unidentified lung infection that led to a heart attack; multi organ failure; sepsis; death in 33 hrs. We scrambled, unseccesfully, to find an ICU bed. There were no
#ventilators
. Here we are at my
#Princeton
graduation. RIP
#AliGumus
My longest running collaboration is finally (provisionally) accepted for publication after 9 years or so (who is counting) and I am now officially ready to retire in peace. 🎉🍾🎊🥂🧿😀
14/ For every child like Mercan, who ‘may’ have a chance, hundreds of others may never collect the $
@Novartis
asks for, or collect it too late. My friend, a scientist, is in constant agony- the family is devastated. Will they collect enough $? Will Mercan be alive until then?
@say_cem
Hocam erkek ya da kadın olması hangi kriterlere göre acaba? Yani pozisyon açmadan o pozisyona en uygun kişinin cinsiyetine nasıl karar veriliyor? ABD’de genelde pozisyona en uygun kişi işe alınır cinsiyet ayırımı kanunen yasaktır da merakımdan soruyorum. Teşekkürler
18-20 Mart 2022 tarihlerinde online olarak gerçekleştireceğimiz
#BIOINFOCONGRESS
II organizasyonumuzun ilk afişini sizlere heyecan ile sunuyoruz.
Katılım ücretsizdir ve kayıt için başvurularımız başlamıştır.
Tüm bilimseverleri davet ediyoruz.
Kayıt için:
Humbled to be celebrated among this remarkable group of strong, independent
#Turkish
women scientists on this
#WomenInScience
day! There are so many brilliant women scientists and trainees from
#Turkiye
! 🇹🇷
Bilimsel etkinliklerimize katılarak bilim paylaşımı adına bizlere destek olan ve bilimsel çalışmaları ile bilime önemli katkılar sunan değerli bilim kadınları başta olmak üzere tüm kadınların ve çocukların 11 Şubat Uluslararası Bilimde Kadın ve Kız Çocukları Günü'nü kutlarız.
16/
@Novartis
, this is consistent w/ your community statement: “We reaffirm our commitment to creating multiple access pathways so that as many children as possible around the world can benefit from Zolgensma… & sustainable access solutions in low- and middle-income countries.”
@ItaiYanai
Itai, hard to take this seriously when > a million humans (half children) are displaced in Gaza. Many cannot relocate because they are too sick or elderly or disabled or injured. As faculty in medical schools it is our responsibility to be on the side of all victims.
A beautiful soul left this world, a student of genetics who battled cancer until the very end... Here is a lovely photo of her with her bf, who shaved his head in support for her, with him she later married.. RIP Cemre... 💜
@lpachter
Well, we could put them all together within a single institute... "Institute for Great Scientific Achievements Integrated with Multi-Harassment Techniques"
Me, waking up with Turkish brain, working on a manuscript: oh, these % signs are all wrong, let me fix them (spends inordinate time reverting each number% to %number - e.g. 3% to %3).
Me, after coffee: Oh wait, why are all these % signs BEFORE the number?
#bilingualproblems
👩🎤
I am a cancer genomics expert - not virus. Yet,
#COVID19
is too close to home. Lost my aunt to
#Influenza
; lost my dad to an unknown lung infection which rapidly progressed to sepsis. Both could maybe be saved had there been beds in the
#ICU
- there weren't.
#StayAtHome
All my CUNY professors tell me that if we get the coronavirus at our age we’ll make a full recovery and I get that 100% but I live at home with a grandma who is 72 years old who has a heart disease, lung problems, diabetes, HBP... she won’t.
#CloseCuny
It was a great pleasure to present our
#genomics
research at the
#Turkish
Medical World Congress organized by
@tusebgovtr
in
#Istanbul
, attended by colleagues around the world as well as ministers of health from multiple counties.
Oh well, this arrived in the mail so I guess it is on... distant and digitally this year... so please allow me to blur the lines between work and life even more... happy birthday to me! 🙃🎊🎉🌸🥂
Can I please just submit a recommendation letter and be done with it? Please grad schools, save me some time. These extra questions that pop up just at the time of submission are torture. 😭
PLEASE RT: 🚨🚨⚡️We have a postdoctoral scientist position for someone with a strong
#CS
background to work at the interface of data visualization and genomics. Knowledge of genomics optional. Please reach out to me directly if interested!
To quickly query regulators of your fav genes in 43K genotyped individuals; 51K experiments; 220 million eQTLs (cis & trans); 14 million TF-binding hits, we built: Now published
@NAR_Open
:
@hipcProject
@ImmuneRegulate
@ImmuneSpace
At
#ISMBECCB2023
in person and could not attend a single session due to packed rooms.Very disappointing because being here in person is a waste od my time at the moment.
19 Mart 2022 tarihinde 18.15-19.15 saatleri arasında
#BIOINFOCONGRESS
II kapsamında, Sayın Dr. Zeynep Hülya Gümüş (
@ZeynepHG
) hocamız 'Akciğer Kanserinde Doğuştan Gelen Genetik Riskler' konulu konuşmasını gerçekleştirecektir.
Kayıt:
#bilimlekalal
ım
We are hiring on an
#NIH
#NCI
supported grant! Are you interested in
#DataVisualization
? Do you have a
#computerscience
PhD (or are you a very strong MS degree individual)? Do you have any training in biology or are you open to learn? Please reach out to me!
As I work on a grant, I think about the times when as little girl growing up in Istanbul, I would dream about my future professorial life: discussing science with my students while drinking sherry by the fireplace on fine snowy afternoons... And then I laugh and laugh.
@mbeisen
@biorxivpreprint
@jchodera
@pollyp1
Thank you for kind offers of help! Were it not for earlier twitter debates on preprints & current encouragement from researchers and editors, I would probably give up. However, times are INDEED changing! I just received a +ive response to my 2nd appeal! YAY! PLAGIARIST NO MORE!!!
Our most recent international study on
#glioblastomas
, with colleagues at
@kocuniversity
is out: Generation of TRAIL-resistant cell line models reveals distinct adaptive mechanisms for acquired resistance and re-sensitization 👇
@notSoJunkDNA
I thought the 'h' had to do with work-life balance so I am going to go with homewrecker. Higher the h-index, more likely that something had to give.
@BeckyCNN
@RTErdogan
Becky, why don't you invite his challenger, Kilicdaroglu, who more than 80% of Turkish-Americans support? Could go a long way in understanding your fellow US residents.
I was in high-school when I first arrived at
#BogaziciUniversity
; sat by the canteen & took in the gardens, Bosphorus & Asia beyond. A magical place. Worked hard to be admitted & study with the best & brightest. Today faculty protest the new rector by turning their backs to him😟